I’ve been watching the unravelling scandal surrounding the ‘pioneering’ cancer treatment of a certain Dr Stanislaw Burzynski with interest for some time now. Since music journalist Luke Bainbridge published this article in the Observer 3 weeks ago, things have moved rather quickly. This is a heart-wrenching account of a family blighted by cancer; his sister-in-law was undergoing chemotherapy for breast cancer when it was discovered that her daughter, 4 year-old Billie, had an inoperable brain tumour. The 2-year survival rate for this form of cancer is ~10%, and in the UK radiotherapy offered by the NHS would, at best, reduce symptoms temporarily. By all accounts, an awful and unimaginably distressing situation for any family to find themselves in. However, the catalyst for the building scandal become evident when Luke outlined the lengths that well-meaning celebrities and concerned citizens have gone to to help raise money to send young Billie for treatment at Burzynski’s Texas-based clinic. The estimated cost of treatment is £200,000. A similar campaign called Hope for Laura also emerged, this time in an attempt to raise £150,000 to finance the treatment of a young mother with brain cancer.
The clinic utilises a treatment called ‘Antineoplaston’ therapy (a brilliant pseudoscientific moniker, to be honest) which involves administering several peptides, amino acids and their derivatives, originally synthesised from blood and urine but now produced from commercially available chemicals, under the hypothesis that these compounds operate as ‘molecular switches’ that may be useful in combating cancers. This is not a new idea and was originally theorised by Burzynski in 1976. Since then, the vast majority of research has been carried out by him or his team to limited or no measurable success. To quote the US National Cancer Institute:
“No randomized controlled trials showing the effectiveness of antineoplastons have been published in the peer-reviewed scientific literature.”
The treatment is not approved by the US FDA (Food and Drug Administration) and therefore cannot be administered as a prevention or cure. Because of this ruling, the Burzynski Clinic is charging hundreds of thousands for desperate patients to be admitted on to ‘clinical trails’, a peculiar loophole in US law, that seem to have no end in sight.
Here in the UK, Cancer Research published this balanced post on their blog, stating:
“At the moment, Burzynski’s antineoplaston treatment has to be regarded as experimental and unproven.”
At this point I feel I should point out, if it wasn’t already obvious from the subject areas of rest of my posts, that I am not a trained biochemist, oncologist or pharmacist, and make no claim to be an expert in any field that Dr Burzynski operates. Yes, I was shocked that an article had made it though the Observer’s editorial process without the above concerns being raised, but at that time I felt that wading into debate in an unfamiliar area would be a bad idea. Besides, the blogosphere is a big place and there are many excellent bloggers out there who are well versed in the field of ‘quackbusting’ and who have my full support. One such blogger is Andy Lewis of the Quackometer, who wrote this concise post in response to the original Observer article.
However, in the wake of this article a tirade of vitriolic frothy-mouthed emails were sent to Andy and also to 17-year-old quackbuster extraordinaire Rhys Morgan by Burzynski Clinic ‘representative’ Marc Stephens, who threatened libel, lawsuits and used a level of heavy-handedness that was certainly tantamount to intimidation, if not assault. Mr Stephens had all the pretensions of an attorney, but with none of the professionalism, candour or qualifications to support them. It soon became apparent that he was a employed in a ‘P.R. marketing and sponsorship’ role. If Burzynski was aware of what Stephens was doing in his name, this was not the work of a scientist, doctor or decent human being. The rallying cry was sounded and the Streisand effect lurched into action . Since then over 100 articles have been written exposing every aspect of the Burzynski empire, from their threats and intimidatory tactics, to their rubbish science and non-existent peer-reviewed publications. This post by the Anarchic Teapot on some those who Burzynski has failed is particularly upsetting.
For me, the final straw came in the form of today’s Observer editorial. Considering the underhanded tactics that (the now unemployed) Marc Stephens had adopted in an attempt to silence Burzynski’s critics, and despite the lack of evidence for the efficacy of his treatments, the crux of the article smeared the UK bloggers as the trolls and claimed the response was insensitive to the families of those behind the campaigns. It was semi-apologetic to Burzynski, spineless and frankly appalling. In every conceivable situation, it is better to know the truth than seek comfort in a lie, and it is for this reason that I am writing this post. No, I’m not a doctor but I am a reasonable, rational human being and I can no longer stand back and watch whilst this man extracts the life-savings of desperate people by misappropriating science for his own corrupt means.
No one who has written critically about Burzynski has done so in spite of the campaigns mentioned above. It doesn’t take a medical doctor or scientist to discover that antineoplaston therapy does not work, and one of the most distressing parts of this entire affair is the cost. Hundreds of thousands of pounds (or dollars) are raised to finance the futile work of a charlatan, when there are many more legitimate cancer charities and research institutes much more deserving of such contributions. This is a travesty. It is unashamed, blatant and transparent extortion of the most abhorrent variety. Like vultures, snake oil salesmen prey on the desperate, the frightened. Empty promises abound and hope is delivered prematurely and without sincerity. With all avenues exhausted and the battle nearly lost, the vultures swoop.
Perhaps Burzynski’s worst crime of all is the fact that he robs people of time. Time is a valuable commodity, especially for those with inoperable tumours, and when nearing empty this precious resource should be spent sparingly amongst family and friends. Instead of coming to terms with the inevitable, however unjust and distressing, desperate parents, husbands and wives invest this most invaluable of currencies as hope in the unfounded claims of people like Stanislaw Burzynski.